Support Groups Focused on Other Disorders

If there are no PSP, LBD, MSA, or CBD support groups near you, consider joining a support group for a similar disorder. It’s certainly worth trying out a Parkinson’s Disease support group in your area! Many of these PD support groups are for caregivers only, and you will find LBD, PSP, CBD, and MSA caregivers attending.

Check out these links on the Stanford University web site of PD support groups in Northern California:

Sometimes PSP and CBD caregivers attend Frontotemporal Degeneration (FTD) support groups since PSP and CBD are subtypes of FTD. Note that these groups are generally focused on the behavioral variant of frontotemporal dementia. There are FTD caregiver-only support groups in San Francisco and Sacramento. Find details here on The Association for Frontotemporal Degeneration (AFTD) web site.

Finally, if you are a caregiver, consider attending a dementia caregiver support group (many of which are run by the Alzheimer’s Association such that most attendees are Alzheimer’s Disease caregivers) or a general caregiver support group. Check out these links on the Stanford University web site:

There are two types of Multiple System Atrophy: a parkinsonism form and a cerebellar form. Orthostatic hypotension is not required for an MSA diagnosis. Learn more.

“Alien limb phenomenon” is involuntary activity of a limb and a feeling that the limb is foreign. This symptom can occur in corticobasal degeneration. Learn more about CBD.

Lewy Body Dementia is an umbrella term that includes both Dementia with Lewy Bodies and Parkinson’s Disease Dementia. The difference between DLB and PDD is mostly of interest to researchers. The “one-year rule” can determine if the diagnosis is DLB or PDD. Learn more.

Frontotemporal degeneration (or frontotemporal lobar degeneration) is an umbrella term referring to disorders of the frontal lobe and temporal lobe. Within this FTD umbrella are movement disorder subtypes, which includes progressive supranuclear palsy and corticobasal degeneration. Learn more about PSP. Learn more about CBD.

Dementia with Lewy Bodies can begin with parkinsonism symptoms, dementia (including fluctuating cognition), or psychosis (hallucinations and delusions). Someone may develop all three clusters of symptoms over time. Learn more.

BSN Case Study

CHARLES NAGY

Charles (Chuck) Nagy, born 1938, traveled from poverty to financial success via the Army where he served as a paratrooper. Chuck was still working, golfing, hunting, and doing charity projects…until he totaled his truck at the age of 72.

Chuck became agitated, offensive and domineering. He would yell at people, drive recklessly, and fall frequently. He couldn’t sleep through the night. Chuck’s primary doctor would tell Chuck to “behave” and send him home to complete a written Alzheimer’s test. Finally, two adult children took him to a neurologist who diagnosed Behavioral-variant Frontotemporal Dementia (bvFTD).

Eventually, Chuck’s dangerous behavior brought police intervention. He was hospitalized and then placed in a memory care facility. Chuck’s family vigorously sought out information about FTD and realized that doctors, caregivers, facilities staff knew little about the disorder.

The family was tireless in taking Chuck on short outings where, according to plan, Chuck would tire after a few hours and ask to be taken back. When facilities staff geared activities toward men, Chuck was a good participant. But when staff were in short supply, Chuck’s agitation was simply treated with anti-depressants.

In the fall 2016, Chuck started to walk away again from his memory care facility. Rather than walk with him to tire him, the staff grabbed him. Chuck resisted. An ambulance came, Chuck with hospitalized for a month in a geriatric psychiatric ward, where restraints were used for 6 days. Chuck was assessed at 6am daily, and was given increasing doses of psychotropic drugs. The family didn’t want Chuck to be drugged but two previous memory care facilities would not accept him unless he was drugged.

Another path was found: Chuck was placed on hospice, without the high doses of psychotropic drugs, and another facility accepted him. After 12 hours at the new facility, Chuck displayed stroke symptoms. Weeks later, his legs began to stiffen; his face became devoid of emotion; and he had difficulty swallowing. Chuck died on January 12, 2017.